PPP or Pustular Psoriasis - A Chronicle

[grannyfranny]

Hi to all,,,,
I do not post much but read a lot. I am also on some other forums. I see so many times that people get pppp after using some of these drugs with Remicade and Raptiva being the worst.
I will not take anymore of the systemic p meds.

I have had pppp for 42 years. All the meds have only made me worse with Enbrel being the worst.  The most recent was Enbrel, Soriatane and MTX. 

Quite by accident, I found that an antibiotic,,,,Keflex,,,,,has helped me more than anything. Keflex,,,,500mg 3xdaily. I got a Staphylococcus  infection and was on an antibiotic for that and at that time my pppp got much better. So my derm is keeping me on it.  I went from using a wheelchair to walking but I do have to limit my walking to prevent the cracked bleeding places.

On my palms, I can see where it was but no pustular places. The bottom of my feet have cleared and I only have "it" on the sides of my heels.

I do use a steroid once a day and very little.  Aquaphor Ointment for moisturizing.

I would urge any of you to try an antibiotic for a long peroid of time. Give it a least 6 months.
I am the best I have been in 7 years.

[BettyRountree]

Helo,

I admit I have not read the entire chronicles but did speed read most.  I too tried everything before going to two dermatologists.  The docotr I have now is GREAT.  He diagnosed PPP right away and I am using Clobetasol generic for Temovate and haveing pretty good results.  Both my feet toes and heels are affected and a small spot on my shin.  I have had EXTREME stress and attribute it to that which my dermo guy said that is what brought it out.  I never told him about my stress he is a dermo not a shrink after all. 

It never goes away but it gives good relief.  Don't know if this ointment was mentioned in the Chrons.  He also gave me aquaphor.

For what it's worth.

Betty

[DoriLynn]

My name is DoriLynn and I have been suffering from ppp for the last year and a half. It began in the middle of my foot and spread out from there. When my hands began to break out, I felt embarrassed working at my job as a bank teller because my hands were constantly in view. When my feet became too painful to walk on, I would spend most of my time sitting or lying down. At 56, I am not ready to give in to anything so discomforting for the rest of my years. I began to study my condition of palmoplantar pustulosis and found that the pain came from the pustules that grew on the skin of my feet. I attacked the problem by using a sterile straight pin and popping the pustules. This immediately relieved some of the pain. Next, I used neosporin on the areas that were red and irritated. I also periodically used small amounts of hydrogin peroxide on small areas that seemed infected after which I would put on neosporin and a bandaid to protect over-night. Each day, in the morning after my shower, in the afternoon and at night before going to bed I rub my feet well with lotions plus a heavier lubricant. I shopped for and used lotions that had very little or no alcohol because that irritates the skin too much and I wanted to stop the irritation and inflammation that seemed to bring on more pustules. I also tried to stay off my feet as much as possible. The lotions I used were simply. "Lubriderm" with Shea and Cocoa butters, or with Premium Oat Extract, "Jason" pure, natural and organic lotion with glycerine and resewater and lastly before bed I put on a great lubricant called "Burt's Bees" coconut foot creme with vitamin E. I have photos of the before and after affects and will attempt to add them on this site in the photo section. I feel that this will maintain the health of my hands and feet for now.
Hope this helps,
Dori

[grannyfranny]

Hi Dori,,,,
Look at my post,,,3rd back from here.
I have used all the ointments and a lot of systemic meds and this is the best I have been in about 7 years.
I am not getting many pustular places anymore and the ones I get are very small and do not hurt.

Hope you get well.

[billy]

Hi all
Just got back from the my GP(at last one that listens).She has put me on another cream to try for 3 weeks.
This cream is called DOVOBET,it contains 50mgs calcipotriol,betamethasone 500mg.
Has any one used this cream before?, and if you have is there any side effects or has it really worked

[grannyfranny]

Billy,,
I have used it,,,powerful steroid.  With prolonged use it can cause the skin to thin.  And, as usual, it may or may not work. It should help some.

The antibiotic has helped me more than anything in 42 years.

[CalamityJane]

Hi Betty:  Just wanted to respond quickly to your post.  I use that cream.  It seems to be quite good, and control well, as long as it is used *pronto" at the first sign of a pustule.

Helo,

I admit I have not read the entire chronicles but did speed read most. I too tried everything before going to two dermatologists. The docotr I have now is GREAT. He diagnosed PPP right away and I am using Clobetasol generic for Temovate and haveing pretty good results. Both my feet toes and heels are affected and a small spot on my shin. I have had EXTREME stress and attribute it to that which my dermo guy said that is what brought it out. I never told him about my stress he is a dermo not a shrink after all.

It never goes away but it gives good relief. Don't know if this ointment was mentioned in the Chrons. He also gave me aquaphor.

For what it's worth.

Betty

Sorry, I'm quite new to this posting stuff.  My problem is that I will have areas on my foot that need to be wrapped with Saran and taped, with the steroid on it........then I have other areas that are healing, perhaps dry and flaking.  It's difficult to do both, and now the PPP has gone around the outside of my left foot, and I'm using a mirror to try to put the cream on.

At 56, I am not ready to give in to anything so discomforting for the rest of my years. I began to study my condition of palmoplantar pustulosis and found that the pain came from the pustules that grew on the skin of my feet. I attacked the problem by using a sterile straight pin and popping the pustules. This immediately relieved some of the pain. Next, I used neosporin on the areas that were red and irritated. I also periodically used small amounts of hydrogin peroxide on small areas that seemed infected after which I would put on neosporin and a bandaid to protect over-night. Each day, in the morning after my shower, in the afternoon and at night before going to bed I rub my feet well with lotions plus a heavier lubricant.

Dori, Hello, I am your age also, and I bought a size 22 needle from my pharmacy, and sometimes pop the pustules.  This controls it only sometimes.  Usually, I still have to wrap them. I use Aveeno lotion, and Elta Light for moisture.  Any pustules on my thumb, or base of thumb, I just pop, get a brown spot, skin peels slightly and bingo, it's gone.

I'm also not ready to give in, however, the greatest joy I have in my life is walking my labby.  If I am not able to walk, then I would have to reassess my options.  I am fortunate that my palmoplanta pustulosis is *not* really sore.  It will become sore if I don't treat foot pustules immediately.

I'm so glad I joined this forum......advice and support is paramount.  Just reading the thread made me feel better

[CalamityJane]

Hi Grannyfranny--I just looked up Keflex.......it's used for skin, bladder, bone, sinus infection/bacteria.  However, there was a warning about people using it that have allergies to the Penicillins.  I have a deadly allergy to penicillin, amoxicillin, etc.  I saw my PCP today, and asked for a referral to another dermatologist.

Just looked through the gallery of pics.  Scares the heck out of me.  I guess I should feel blessed that only one foot is involved, and very little on my hands, just a spot or two.  I have to work on feeling blessed.

[austinpsi]

Just found this sight a couple of days ago.

I'm an old baby boomer (59 - yikes!)

Back in the mid 60's, when sunbathing everyday, I started getting pustules on my hands. Over the years, I continued to get them, off & on.  They didn't cause any major problems.  I don't sunbathe anymore, so thankfully I have no problems with my hands.

I've also had sores on my scalp throughout my adulthood.  It used to worry me somewhat, but again, they were off and on.  No hair loss.  Just itchy scalp sores, which I continue to have.

About 5 summers ago, my feet broke out in little pustules, and it began.  I didn't know what the hey was going on.  I went to my PCP.  He looked at the bottom of my feet and said (I kid you not) "Jesus Christ!"  Then, he said it looked like psoriasis. 

When it first happened, I started self medicating.  I tried stuff to dry out my feet.  That didn't work.  I had a tin of Udder Balm I had won at a White Elephant Christmas Party, so I was swabbing that on my feet at night.  That provided relief.  My PCP prescribed some expensive cortisone creme (Anusol-HC 2.5%), but also said I should go to the local feed store and get some "tit balm" as he called it!  Of course, I already had that.  He also referred me to a Dermatologist. 

I couldn't even get a Dermatologist to return my call.  I tried several times, then gave up.  I have a new PCP, and have considered seeing if he could help me get a Derm appointment, but after reading here, I don't think I even want to go there. 

I read about psoriasis on the net, and found that there's really no cure, so I've continued to just do this and that, and figured it's just a curse I'm stuck with.  So basically, that's my attitude.

I have told people that my worst enemy is my hands.  I can't stop picking at and peeling the dry skin!

I've missed a few days of work over the last few years because the pain of walking is severe, but that's usually because I've peeled the skin so much that it's left open wounds.  That makes me feel very foolish and almost like I have OCD.

My little pug dog licks my feet compulsively, and I feel she knows there's something wrong.  I let her do it, because I secretly wish it would heel my wounds.  Hasn't worked so far - lol!

Anyway, I'll continue to read here, and am thankful to have this forum. 

One last thing.  My mother died a year ago.  She used Chamberlin's hand lotion her whole life, because she had allergies to a lot of hand creams.  I kept her last bottle, and noticed it on my kitchen counter (where she always kept it at her house) this evening.  It's a glycerin/alcohol substance.  I thought to myself that maybe she left a magical cure for my condition.  I rubbed some on my feet and put on my white sockees.  I'll let you know if it provides any relief!

[Wooley]

hi austinpsi

Welcome to SkinCell!!

I just wanted to say, firstly have you checked the use by date on your mothers hand lotion? Just to check it is not past it's best.

Also about your dog licking your feet...this is just my opinion but I honestly think it could make your feet worse, especially if you, as you say, have open sores.  Open sores are an entrance into your body for all sorts of things and, lets face it, dogs not only clean their rear ends with their tongues, but they also eat practically anything as well.  Just bear in mind the bacteria that could be in your dogs mouth while you are letting her lick your feet.

I hope you find this forum helpful.

Wooley

[austinpsi]

Thanks for the welcome.  I've got a shopping list of topicals to buy tomorrow, based on recommendations I've read here.

I can assure you that my little pug is not allowed to lick my feet when there are actual sores - I've got them covered with ointment and socks when that's the case.  It's just another option, as I've always heard that animals cure their own wounds, and I've witnessed it.  Plus, it's like getting a massage and it feels very good!

Using my mom's last bottle of Chamberlain's is more a sentimental thing.  It was just another in a long list of trials. 

Anyway, I'll stay tuned!

[skipmoocow]

All these replies, and still no real cure short of methotraxate (which can seriously screw you up) working for someone.  Well, I will be the first to boldly declare that I am confident that my PPP has been cured for good, and has not just gone into remission.  With my eczema when it wemt into remission for a while, I can still sense that it is there.  Same with the PPP.  Now I feel that It is gone for good, and is truly cured.  I encourage everyone to read my thread Eczema Cured? - My Journey under skin complaints and skin disorders. 

[mjesmith]

Well guys, it has been a while.  On 04/27, I had a successful rt. knee arthroscopy, from which I walked out of the surgery center pain free.  Being off of the Enbrel for 2 weeks frightened me that a flare would occur......and it did! My PPP has reeked havoc on my feet and legs.  A week and a half later, for my birthday, I got a kidney stone which required surgical removal, and then........a week after that I lost my father-in-law.  Needless to say, my stress level has been up, and rather than being out of work for two weeks, I have been out 5 weeks......and then I have since found out that furuncilitis, is not uncommon, esp. with PPP....and how do I know?  I have an outbreak of that too!  Other than that, all is great and I will be back soon.  Everyone keep up the good work!

Love and Blessings to all!

MJ

[joanne001]

hi billy
i am using dovobet at the moment, it's good for the redness and sorness on my hands and feet but still getting clusters of blisters all over the palms of my hands, i am having a particularly bad flare up at the moment after having being nearly free of ppp for 4 years, thought it would never come back again like it was 4 years ago, but now i know what thought did didn't i. 

[CalamityJane]

My foot is badly broken out, and is very sore.  My main pleasure in life is walking my lab.  My foot is worse in the warm weather.  I try to wrap it, but the wrapping comes off part-way through my walk, then it's even more sore.  I'm slowly giving up.

[JulieN]

Okay I confess to only reading your first post before responding, but I am new to the site (My first post is on the introduction line).  Today is the first day that I have found anyone who has had symptoms even close to mine.  Your experience sounds so similar to mine and my feet look just like the pictures on the home page.  Except I no longer get the blisters.  Since your wife is a nurse and you seem to have been dealing with this for a while, do you know, can they do a test and find out if this is what I have for sure?  Sorry after 12 years I am way past amputation.  Are you really telling me that if I have this there is no cure?

[CalamityJane]

Okay I confess to only reading your first post before responding, but I am new to the site (My first post is on the introduction line).  Today is the first day that I have found anyone who has had symptoms even close to mine.  Your experience sounds so similar to mine and my feet look just like the pictures on the home page.  Except I no longer get the blisters.  Since your wife is a nurse and you seem to have been dealing with this for a while, do you know, can they do a test and find out if this is what I have for sure?  Sorry after 12 years I am way past amputation.  Are you really telling me that if I have this there is no cure?

Hi Julie, Welcome to the forum!  Whose post are you responding too?  Perhaps I haven't read it, I haven't been here long either....I see you are online right now too lol

[JulieN]

Oops!  Calamity Jane, did I send my reply to the wrong place.    As I said in my post I am new back to forums.  The last time I spend anytime posting I was using Prodigy.  I know that dates myself and this being a UK forum I am not sure if anyone will even know what Prodigy is.  I apologize if I sent my reply to your e-mail.

Yes any information that I can get would be helpful.  My husband is encouraging me to give the doctors another try, but I feel so guilty when I do because I am taking money away from my family and I feel like I am just chasing medicine men.  The guy who started this string talked about thinking about amputation to get rid of his 'rash', but I crossed that line about 3 years ago.  This is relentless.  I have not had a day of peace since May 1999 (original outbreak was Aug 1994) with the exception on when I am pregnant, but my husband refuses to let me get pregnant just to escape the itching.  I really do not think my family gets how much it hurts as well.

[CalamityJane]

Oops!  Calamity Jane, did I send my reply to the wrong place.    As I said in my post I am new back to forums.  The last time I spend anytime posting I was using Prodigy.  I know that dates myself and this being a UK forum I am not sure if anyone will even know what Prodigy is.  I apologize if I sent my reply to your e-mail.

Yes any information that I can get would be helpful.  My husband is encouraging me to give the doctors another try, but I feel so guilty when I do because I am taking money away from my family and I feel like I am just chasing medicine men.  The guy who started this string talked about thinking about amputation to get rid of his 'rash', but I crossed that line about 3 years ago.  This is relentless.  I have not had a day of peace since May 1999 (original outbreak was Aug 1994) with the exception on when I am pregnant, but my husband refuses to let me get pregnant just to escape the itching.  I really do not think my family gets how much it hurts as well.

Hi, no reply not sent to wrong place.  I did send you a personal message and I got one back from you.   I think I'm much older than you, even though I don't know what Prodigy is (or was).  I thought this group was USA, but perhaps it is UK--my homeland.  Both are great with me.  Just wonder cos of the time thing.

[JulieN]

I live in California.  Funny thing is I peeked at your bio when I got your first post.  I had a roomie in Mallorca who was from BC.  Yes I am a tad younger than you.  Prodigy was a BB owned by Sears of all things and it was the first forum that stepped out of dos based text.  That was way back in 1991-ish. 

My 'rash' covers the instep of both feet and is spreading to the top.  I wear flats because I can not bare the itching when I wear tennies and now you are able to see the top edges as it comes up the outside of my feet.  And it is on my hands now.  Weird thing is I think all of the moisturizers make a breeding ground for fungi or other growths.  So I try to treat for that regularly.  Right now Monostat is working as a great antibaterial and a moisturizer.  It is just really weird.

The only thing that has gotten rid of it in the past is preg.  I am not sure if it is the increase in blood pressure or the hormones, but it works.  I have four now and we thought we were done, but oops!  Looks like I might be getting another break.  Not sure this is the best cure.